Sometimes we feel totally alone in a world of healthy people. If we are isolated because we are so ill as to be house bound it is especially difficult. But even for those who are still working or active in other ways there is a sense of being set apart. Friends and coworkers may not understand what we are going through and we may be hesitant to tell them.For many of us our condition is hidden so we are forced to explain when we aren't able to do something whether it be an assignment at work or an outing with friends. We get varying reactions. In the cases of fibromyalgia or chronic fatigue disorder people may hint we are being a hypochondriac. If your condition is life threatening some people are too uncomfortable to even talk with you while others are full of advice and quick fixes. We don't need to share our chronic condition with everyone. It's just not worth the awkward conversation that is usually too brief to help. But we do very much need supportive understanding from family and dear friends.
These people who love us the most may seem like they don't fully comprehend our situation. Especially at first they are reluctant to believe we won't be well soon. Each time we have a remission they are sure that we are completely healthy again. It's up to us to explain again and again how we are feeling and what we are able to do. Some of us worry that we are complaining too much so we minimize our symptoms. It's best to stay calm and tell it all as accurately as we can. In other cases those close to us become overly solicitous and we have to help them see that though we appreciate their caring, too much concern can hurt.
It is a blessing when those who are close to us understand our disability but that doesn't mean we dwell on our symptoms. Whenever possible we need to just enjoy other people and take pleasure in doing the things that we are able to do with them. Most of us will find our circle of acquaintances gradually becomes smaller because we haven't the energy to get out a lot. Even some good friends drift apart. It's hard for a high energy person to stay connected with a friend who tires easily. Other friends become dearer than ever.
The Internet has become a wonderful resource for those of us with chronic illness. We can find information, message boards and chat rooms where we are able to connect with people who have similar conditions. We find sympathy and support in these places. But we don't want to become preoccupied with our limitations. There are sites and message boards on just about every hobby and interest you can dream of. You might choose to join a block of the month club on a quilting site, get involved in a writers forum or even take an art class online.
Our time and limited energy is precious to us and it helps to plan carefully how we want to use it. This may mean skipping that social get together Friday night or it may mean going but limiting our time there. Perhaps the occasion is so special that it's worth risking a setback in order to enjoy the full evening.
One way some of us wear ourselves down is by staying online too long. We need to make the same kind of decisions about computer friends and support. Picking a couple of forums to participate in and using a chat program to talk to special friends can be wonderful ways to connect with others. It's a matter of getting online only for those activities that nurture us and then turning our computer off.
Supportive friends are important to our well being when we are chronically ill. Finding the nurturing friends that we need is hard work when we are sick and feeling down. It won't happen overnight but with perseverance we can develop friendships based not only on our disabilities but also on other common interests. We are worth the time and effort that takes.
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